1997-2000: Lawnet

Completed projects

Introduction

When drafting the European Care Manual, we had decided to include a section on the legal protection and rights of people with dementia. However, it soon became clear that not only did this differ greatly from one country to the next, but there was a distinct lack of information both from our member associations and from legal experts. As our member associations clearly felt that this was nevertheless a very important issue, it was decided that Alzheimer Europe should make an inventory of all legislation relating to the rights and protection of people with dementia in the European Union. This was made possible thanks to the financial support of the European Union. Having completed the inventory of exiting legislation, we realised that the results could be used in two ways: 1) to inform people with dementia and their carers about their rights and 2) as a means to improve the legal rights and protection of people with dementia by using them to draft legal recommendations. With the continued support of the European Union, this was made possible.

Funding and duration

In December 1997, Alzheimer Europe received a grant from the European Commission under the programme "Actions in favour of people suffering from neurodegenerative diseases, more particularly Alzheimer type (DAT) and related disorders and their (informal) carers" to carry out an inventory of existing legislation relating to the rights and protection of people with dementia in the European Union. This came to be known as Lawnet I. It ran from 1 december 1997 to 1 June 1999.

On completion of Lawnet I in June 1999, a second grant was received from the European Commission; this time from the programme "preparatory measures combating and preventing discrimination." This enabled us to write the legal recommendations to improve the rights and protection of people with dementia which came to be known as Lawnet II and ran from 1 December 1999 to 30 November 2000.

Participants

All our member associations were involved in Lawnet I, as well as a scientific advisor (Nicole KERSCHEN) from the Centre National de Recherche Scientifique in Paris. For Lawnet II, a working group of eight experts were appointed (on behalf of the Alzheimer Associations) to assist Alzheimer Europe in the drafting of the recommendations. All were legal experts, some were also carers and one was an expert in geriatric psychiatry:

United Kingdom: Alan Jacques and David McClements (Alzheimer Scotland-Action on Dementia)

We were also grateful for the participation of Jean Claus and Péteris Zilgalvis from the Council of Europe.

Objectives

Our main goals were:

to collect, translate and compare legislation relating to the rights and protection of people with dementia in the European Union

to write a set of legal recommendations to improve the legal rights and protection of people with dementia

Methodology

For Lawnet I, we established a framework for the collection of legislation which consisted of three main topics: 1) guardianship, 2) involuntary placement and 3) bioethical issues. We then sought copies of laws, rulings, codes of medical ethics and any related information from all the member countries of the European Union. In certain cases, we visited countries in order to speak to legal experts and representatives from official institutions. In order to understand much of the information and laws collected, we arranged for the translation of numerous documents. We then drafted a separate report for each country, which was checked by legal experts in each country and necessary amendments made.

Lawnet II involved a series of expert meetings held in Luxembourg during which various drafts of legal recommendations were debated. Between the meetings, the drafts were circulated, comments made and amendments constantly made. In addition to the three themes mentioned earlier, guidelines on the use of restraint and an advance directive were produced for the purposes of further debate by multi-disciplinary teams (e.g. legal experts, medical and care staff, informal carers and people with dementia wherever possible). The final draft of the recommendations was discussed at the Annual General Meeting of Alzheimer Europe which was held in Munich on 15 October 2000. The recommendations were unanimously accepted by 22 member associations (with an additional member association accepting with reservations and two abstentions - Sweden and from Norway).

On 23 September 2000, a forum on the legal rights of people with dementia was held at the European Parliament in Luxembourg.

Results

The results of Lawnet I and Lawnet II are as follows:

A national report explaining the legal provisions with regard to guardianship measures, involuntary placement and bioethical issues (i.e. consent to treatment and research, the right to be informed and end-of-life decisions) for each country in the European Union (with an additional report for Scotland due to the fact that legislation differs to that in England)

Translation into English of legal texts (included at the end of each national report)

Legal recommendations on how to improve the legal rights and protection of people with incapacity due to dementia

Guidelines on the use of restraint (discussion document)

Advance directive (discussion document)

Short summary in all the official languages of the European Union

Proceedings of the forum held at the European Parliament in Luxembourg on 23 September 2000.